I’m having a difficult time right now

[MerrieMiss]

My youngest son was diagnosed with a very rare, anomalous congenital defect. This is a complete surprise to us as he has no symptoms and it was a routine checkup that prompted an extra test for “peace of mind” that discovered this. He will have major surgery this month to correct it. The condition has a 90% mortality rate in the first year of life if not corrected. He is four. He is a rare case.

For the record: I don’t believe any of this has anything to do with god, the church, my lack of faith, nothing. It is an anomaly and coincidence. I am not struggling with why this would happen or anything like that.

There are a lot of reasons this is difficult.

• It’s difficult because this is my son and I’m worried about him. I’m also worried about my other child and his feelings and reactions to all of this.
• Since he’s a rare case and he’s healthy, the surgery was delayed for an adequate period of rest before going under general anesthesia again. We’ve known about this for a couple of months. The waiting is very unpleasant.
• I was going to tell my husband about my disaffection when all of this came up. Now I feel like I can’t because this is just too much for him all at once. There is never a good time to talk about it, you know?
• Stupid reasons for this happening. It’s an anomaly – there doesn’t have to be a reason. No one is to blame, it’s not part of some divine curriculum, no signed up for it. It just happens a certain percentage of the time. And no, your essential oils are not going to help. (Neither are priesthood blessings, but oddly enough that hasn’t come up yet, I’m preparing for a surprise visit from the in-laws for this one.)
• Originally this brought back a lot of apparently unresolved feelings about religion/god/the church. It was during the pregnancy/birth/infancy of this child that I jettisoned all belief. I’d been struggling for years and was doing the NOM-ish thing, but I just had to admit it wasn’t true and let it all go at that time. I thought I worked through it all, but this made me realize I hadn’t. It’s almost like being transported back to the crisis-y part of my faith transition. If this was a different kid who was going through this I don’t think I’d have felt this way. It’s not so much of an issue now as when he was initially diagnosed, although maybe when he’s in the hospital and we’re going through this I’ll find I’m not done and it will all come back.

One of the better things to have happened through all of this:

• This has facilitated some much needed and delayed conversations between my husband and me.
• His family is showing their true colors. I don’t know that this is a good thing, but it really goes far in showing that “family is the most important” is really just a trite phrase.They have been incredibly distant and manipulative and needy. I don’t have time for making them feel good right now – I’ve got a lot of my own problems. My kids are my priority. I’m getting close to telling the in-laws off. Even worse, my easy-going and incredibly affable husband is getting close. It may actually happen, I don’t know.

I haven’t been to church in a month and a half. I probably won’t be there again until September at the earliest, October may be more likely. I don’t know how I’ll go back. And I don’t want any help from the church or our ward, but I find it very odd – I know the leadership of the ward knows our situation, but I haven’t had a VT (or ministering person) since February. No contact at all – not even cookies or a phone call or a card. We have no home teacher. No one has contacted us to say anything. I live in the same neighborhood as the RS president, ward clerk, EQ president (I can see their houses from my house). It’s so strange. I’m not offended and I really don’t care (we have lots of family in the area and friends from our old ward who are helping out), but it’s all so strange.

Some days I’m okay, some days I’m not. Sometimes I want to cry and get it all out, but I just can’t summon the tears or feelings. It seems unreal, especially since there are no symptoms. I feel bad in a sense for doing this to what seems like a healthy child. But I’ve seen the pictures, I've read the literature, and I trust the doctors – it’s just a matter of time until this becomes a very serious problem or results in sudden death. Sometimes I feel like he’s a ticking time bomb.

Now that the surgery is very close, I can tell I’m getting anxious – I’m snippy with the kids and I am incredibly tired all of the time. We kept really busy for the past couple of months doing fun things because the rest of the summer is not going to be fun at all, and now we’re just laying low, keeping my son from getting sick so we can get on with the procedure. More waiting.

I’ve thought many times about posting, but I don’t know what to say. Even now, I look back over this and see incoherent ramblings. I’m not sure what I’m trying to say. I guess today is one of those days where I feel empty.

[Linked]

I'm so sorry to hear about your son's condition and the stress it is putting on you and your family. I hope it all goes well and your son stops being a "ticking time bomb", so you can raise him without that added worry. I'm glad you posted it here, I hope it was cathartic and the responses are helpful.

I thought all those reasons for this being difficult make sense. Waiting and worry are so frustrating, it sounds like you did a good job keeping busy so far. Next year this limbo time will all be a distant memory. There is certainly never a good time to bring up disaffection, even after a TBM spouse knows about it, hang in there and do your best to live your best life.

Good job being a good mom!

[MoPag]

So many hugs for you my sweet friend!!!

There's nothing like selfish family members making an already difficult situation even more difficult. Linked is right though. This time next year it will all be a memory.

[Red Ryder]

Life sometimes brings challenges. Learning to breath and control the emotions of such stress is hard to do.

MM, you might consider this as an opportunity once you are past the difficult phase and life gets back to normal. Use it as an opportunity to bring up the church with your husband by reflecting on feeling distant from God, members, and "unanswered" prayers and empty promises. Casually work this in that you feel the church let you down in the time you needed it most.

You could also suggest taking a sabbatical of sorts on order to "recuperate and recharge" during such and emotional time. Suggest to your husband that you all need to hunker down and spend time recuperating as a family. Limit or stop all time spent with his family, your family and the ward family. Then take time off to do only the things your family wants/needs to do.

Then use this time to work through the disaffection with your husband. Be open and honest as young feel is necessary. As we all say here, take it slow. It's all going to be OK.

[2bizE]

MerriMiss,
You have a special place in my heart. It sounds as though you have found peace with yourself, but relatives may not. May you find the patience and tranquility to help your son and family through this difficult time.

[No Tof]

So sorry to hear about your tough situation.

It’s times like this that I miss being able to say you’ll be in my prayers. However I can and do send you sympathy and supportive waves of the love which links us all together as human beings.

Wishing you peace.

[deacon blues]

You are in a very difficult situation. Anyone would struggle with the challenges you are facing. I would hope you could find a compassionate friend who you can really talk to. It sounds like your husband has been understanding in the past. Your maturity shows in your comments on this thread, and on others where you have shared your thoughts. I hope for the best for you, your son, and your family.

[alas]

When it involves your child's health, it is just plain hard to cope with, and hardest on mom. So, you do what is best for you and your child while you get through this.

If your in laws are being selfish at this time, it just might be best to tell them off. I had a parent like that. No matter how bad what I was coping with was, my first job was to comfort HER. She was never there to help or comfort me, but so needy herself that I ended up helping her through on top of dealing with it myself. I handled it by just cutting off communication, but then I lived thousands of miles away. If she had lived closer, I would have had to tell her to grow up.

[Mormorrisey]

When it involves your child's health, it is just plain hard to cope with, and hardest on mom. So, you do what is best for you and your child while you get through this.

If your in laws are being selfish at this time, it just might be best to tell them off. I had a parent like that. No matter how bad what I was coping with was, my first job was to comfort HER. She was never there to help or comfort me, but so needy herself that I ended up helping her through on top of dealing with it myself. I handled it by just cutting off communication, but then I lived thousands of miles away. If she had lived closer, I would have had to tell her to grow up.

Yep. This.

Nothing worse to deal with than a child with health challenges, you just feel so helpless. I'm so sorry you're going through this on top of the challenges with your in-laws. Just sending you some empathy your way.

[Archimedes]

Oh how heartbreaking. I hope the treatments are successful. Hope you are able to continue to focus on what is important, completely free of guilt and MormonThink. Your baby needs his momma bear right now. The in laws can Sit and Spin.

Best wishes and positive thoughts to you.

Arch.

[Thoughtful]

I am sorry, this sounds paralyzingly stressful. I am glad he's a rare exception, but I can hear the worry in your words.

So many parts of this post resonate with me, though my current stress is different, the faith transition being confounded by it, the extended family making it all about them... people are starting to surprise me less and less. I think what we believe about human nature is generally more positive than the reality.

Sending love your way. I hope things settle for you a little bit so you can get some respite.

[slavereeno]

I am sorry to hear you are struggling with these kind of health issues. Internet hugs.

[Lithium Sunset]

I am so sorry. You were holding all this inside for so long... and then to hear those awful words from a misguided friend. Even if you can be practical about it... it is still wrong and hurtful.

Family can really suck and so can people. My son doesn’t like this saying but it resonates too well with me... “hell isn’t a place, hell is people.” But then waiting and worrying can feel like hell too, and fear. I can imagine, pulling from experiences, how hard the waiting is.... the ticking time bomb. I hope that he will only need one surgery, that you can put all this behind you after it. It all sounds very scary, but you seem very strong. A mother’s strength she gathers, with unmeasurable love, for her son. Try not to feel bad about being short sometimes. They know how much you love them. Just give yourself time-outs when you can.

Hang in there. The library has tons of movies, old and new. I think making a big fort or giant family bed in the living room, in front of the tv and spending the rest of the summer resting and showing the boys how funny old movies can be sounds like a great end of summer.

There is nothing I can do but you and your family are in my thoughts. (Your exended family is in my thoughts too, but they are hanging out in the dark part of my mind... let’s call that place the dungeon where people get sense knocked into them).
Best wishes and hugs.

[crossmyheart]

I am so sorry you are on this roller coaster of emotions. I can relate on so many levels.

Currently writing this from my son's hospital room. We spend a lot of summers in the hospital for scheduled surgeries while everyone else posts Facebook travel logs of fabulous vacations. My mom is the narcissistic relative who needs attention. Despite anyone else's current trials, hers trump all because she is a poor little old widow.

My DH is still trying to keep one foot in the church. So he pulled out the consecrated oil and wanted to give my son a blessing. But in the last few years we have done it our way. We both lay our hands on his head and say prayers together over him. I am no longer theistic so to speak, but I still believe talking out loud to the universe is cathartic. So when it is my turn to speak I talk to my son and tell him my love and my thoughts and my desires for him. It is very special. I am his mother, I gave birth to him and it is my right to speak words over him of blessing and of hope and of peace and of love. I stood over him in his crib when he was an infant and gave him my own Mother's blessing the night before he was blessed at church and it was so empowering.

My best piece of advice is to look for a support group for parents of children with your son's condition. If you don't find anything on Facebook or some of the parenting websites, try meeting with a social worker at the hospital. They will know about any local support groups that may be specific to the condition or may know of simply a local family resource group for parents of medically fragile children that could give you some support. Making friends with other families who are going through the same thing has been so comforting.

Good luck with the surgery. PM me if you need a friend.

[MoPag]

My best piece of advice is to look for a support group for parents of children with your son's condition. If you don't find anything on Facebook or some of the parenting websites, try meeting with a social worker at the hospital. They will know about any local support groups that may be specific to the condition or may know of simply a local family resource group for parents of medically fragile children that could give you some support. Making friends with other families who are going through the same thing has been so comforting.

This is really good advice. Your hospital should have contacts of support groups and pastoral care that can help you. Reach out to them. It makes a world of difference! Love you MM and Crossmyheart! Hang in there!!

[Red Ryder]

We both lay our hands on his head and say prayers together over him. I am no longer theistic so to speak, but I still believe talking out loud to the universe is cathartic. So when it is my turn to speak I talk to my son and tell him my love and my thoughts and my desires for him. It is very special. I am his mother, I gave birth to him and it is my right to speak words over him of blessing and of hope and of peace and of love. I stood over him in his crib when he was an infant and gave him my own Mother's blessing the night before he was blessed at church and it was so empowering.

This is awesome! Just awesome. F the apostles who think they can control who gives a child a blessing.

We don't do the blessing thing much anymore but I'm now going to reconsider with this in mind!

Love it!

[redjay]

MM

I also love what Crossmyheart said. Best thing about being NOM is we get to do things in our own terms, if that is using no faith, or a little faith, or lots of unorthodox faith. We can also engage with other Mormons, as we choose. So if some decent people reach out and can be trusted, you might want to let them in, just as much as you are willing.

Anyway I am sorry to hear of this challenge. Sounds like you've got a fighter there. So try and stay positive and cross each bridge as you come to it.

[blazerb]

Take care. This is a really hard situation for you. I can't imagine what you are going through. I hope you can find the help you need.